Crohn's Disease Symptoms That Aren't in Your Gut

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As if the symptoms of Crohn's itself weren't bad enough, many people with the illness also experience serious symptoms outside their digestive tracts. From joint pain and fatigue to malnutrition and skin problems, Crohn’s can lead to a variety of "extras" that can compromise quality of life. Our expert guest, gastroenterologist Dr. David T. Rubin of the University of Chicago Medical Center, explains these additional symptoms of Crohn's disease, talks about their short- and long-term health risks, and suggests prevention and treatment strategies that may work for you.

What Are the Non-Digestive Symptoms of Crohn's Disease?

Dr. Rubin:

We're talking about problems in organ systems outside of the intestinal tract. And when we start evaluating patients who have these bowel conditions, we find out that many of them have symptoms that involve their joints or their skin or other parts of their body. It's very important to assess those because sometimes they actually give us clues to the underlying cause or activity of their bowel diseases.

When we see somebody who has, for instance, the most common extraintestinal symptom, joint pain, what we want to know is, number one, is this joint pain that's related to the bowel inflammation and a result of it? We don't always understand why that may occur, but we want to distinguish whether this is, in fact, joint pain that is a parallel process, in other words another disease that happens to be also happening in this individual patient. Distinguishing between the two is important because the treatment strategies for these may be very different.

In fact, not only can some of the extraintestinal problems we encounter be related to medication, there is a theory that sometimes medications used to treat inflammatory bowel disease may turn on or trigger some of the other problems, so we have to be thoughtful about this and understand what we're doing.

Why Is It Important to Treat Non-Digestive Crohn's Symptoms?

Dr. Rubin:

The extraintestinal manifestations of Crohn’s disease in some patients are more disabling than the bowel problems. We should be addressing those as aggressively as we treat their bowel problems. When I see patients with inflammatory bowel disease, I always outline the goals of our management strategy.

Number one, we talk about an accurate diagnosis of the disease. So we want to make sure we know what type of bowel condition we're dealing with, but actually we broaden that to include an accurate diagnosis of any extraintestinal problems they have. And we want to know, are these specifically related to the bowel problem, or are they co-existing with the bowel problem but independent?

Number two, we then talk about induction of remission. We want that to reflect turning off all the inflammation, turning off all the problems that go along with the active bowel disease, such as diarrhea or pain or bleeding or urgency.

When we succeed in inducing remission, we move on to the maintenance of remission and keeping somebody healthy and doing well for as long as we can to prevent relapses of the disease. Our next goal is to avoid surgery when we can but to understand that it is an effective treatment option and to embrace it when it's necessary.

And then the last goal is to achieve an unrestricted quality of life. And if we don't approach each individual patient by using these goals and reminding ourselves of what these goals are as we go along, we may be turning off the bowel inflammation but forgetting that our individual patient is having trouble walking or getting to school or not able to function in the rest of their life.

What Causes Malnutrition in Crohn's Patients, and Can It Be Prevented?

Dr. Rubin:

There are two major reasons people become malnourished when they have inflammatory bowel disease. The first one is due to the bowel itself, and what we would describe as decreased absorption of nutrients. That may be due to inflammation of the bowel that doesn't allow you to absorb the nutrients that your body desperately needs. It may also be due to resection, or surgical removal, of bowel. So if you have had portions of your intestines removed, you can end up with malnourishment or at least malnourishment of specific nutrients. People who have strictures or narrowing of their bowel, or who have had surgeries and have scar tissue in their abdomen, can develop loops of bowel that have an excessive amount of bacteria, and they actually can contribute to types of malabsorption.

The second major category of malnutrition is simply that people are not taking in enough calories. People learn very quickly when they suffer from these disorders that if they don't eat or they eat a lot less, their symptoms are minimized. So they develop what we call food phobia, which means that they've learned that when they eat they feel bad, so they start to either consciously or even subconsciously avoid eating enough, and by limiting their diet they can end up becoming malnourished.

To me, that's an unacceptable lifestyle, to achieve an unrestricted quality of life that also means enabling people to be liberated from these types of elimination diets so they can enjoy all the things they want to enjoy.

The better way to manage it is not to eliminate more and more foods so that they don't feel any discomfort, but rather to understand the extent of their disease and to employ appropriate therapies to take care of it so that they can enjoy eating the different foods that they want.

What Causes Fatigue in Crohn's Patients?

Dr. Rubin:

The number one cause of fatigue is probably the bowel disease itself. Our current understanding is that it's a dysregulated immune response, meaning that the immune system is turned on but it can't find the off switch. So imagine there's a war going on inside of you. That expends a tremendous amount of energy, and not only does it result in profound fatigue, it also increases the number of calories your body is burning and requires to keep its energy levels up.

Now, the other thing that we must always think about is fatigue related to anemia, or low red blood cell count, which can happen from either loss of blood from active disease or malabsorption of iron or vitamin B 12 that can cause anemia. Drug related side effects can cause fatigue. So we have to review all the different medicines patients are taking.

Patients who have bowel disease that's active are waking up in the middle of the night to have bowel movements, so disrupted sleep patterns make you very tired during the day for obvious reasons.

And lastly and very importantly, we need to understand that people who have chronic bowel problems can have a co-existing depression. It's for obvious reasons. But if we don't address that and identify it when it's there, we won't get at what's causing these patients to feel so badly.

When we assess somebody for fatigue and we feel that their bowel is truly in remission, we look at how long ago they got into remission, remembering that after somebody has had a flare it takes a while to recover. Sometimes people are so anxious to get back to their life, get back to work or school that they push themselves too hard right away. We always check their blood count. And then we look for concomitant immune diseases, such as thyroid disease.

And lastly, if you've been on prednisone and you're just getting off of it, which is always a good thing, your adrenal glands, which is your body's way of making natural steroids, sometimes don't wake up rapidly enough. And when your adrenal glands aren't making the natural steroids your body needs to function, you'll be very, very tired.

Are Joint Problems in Crohn's Disease the Same As Arthritis?

Dr. Rubin:

Rheumatoid arthritis and psoriatic arthritis are actually destructive arthropathies or joint diseases, and the joints are undergoing damage over time. However, the joint pain in Crohn's disease is, in most cases, not destructive. It can be very disabling, but it doesn't destroy the joint. So they're probably very different in terms of what causes the pain in those different disorders.

The most common joints that are involved in Crohn's pain are the small joints of the hands, the wrist and the knees. Those joints are often related to bowel inflammation. You treat the bowel, and the joint pain goes away. Interestingly, the joint pain can actually precede the diagnosis of Crohn's.

We treat the joint pain by first treating the bowel aggressively. When we are convinced that the bowel is in remission, we then, if they're still having joint pain, can move on to additional therapies. But we don't want people suffering or thinking that they have to live with this, so that's part of what we have to do.

In addition to the small joints, there are a variety of joint problems that involve the lower back or the pelvis, conditions known as ankylosing spondylitis or sacroiliitis. These conditions are diagnosed with inflammatory bowel disease and sometimes exist without any inflammatory bowel disease. They tend to be independent of the bowel problem, so the bowel can be treated effectively and the joint pain in the lower back and the pelvis can continue. When that's the case, these deserve their own anti-inflammatory treatments, some of which are just like what we use in IBD.

Are Crohn's Patients at Increased Risk of Osteoporosis?

Dr. Rubin:

Osteoporosis refers to having a low bone density. Many people know about osteoporosis because it's something that women are at risk for when they reach menopause because they don't have hormones that can help them absorb calcium and rebuild bones.

But people with Crohn's disease can get osteoporosis for a variety of very important reasons. One is related to the use of steroids. We know very, very well now that when patients are given steroids, even for a short period of time, they have bone loss that begins immediately from the onset of the steroid use.

The second is because they may malabsorb different nutrients such as calcium, the other might be vitamin D, which is essential in our metabolism of calcium and the building of bone. We've also identified that many patients with Crohn's malabsorb vitamin D and don't even know they have a low vitamin D level. Those who may be at even increased risk are those who don't live in sunny climates and those who may have different skin pigments. So we have to be aware that vitamin D deficiency is part of what causes osteoporosis in the Crohn's population.

Whenever anyone starts prednisone, they should also be on calcium and vitamin D, and those therapies are available over the counter at the drugstore without a prescription. You have to remember though that calcium can cause constipation. So we always have to keep in mind, especially in Crohn's patients, that if they take calcium, they may get more constipated. Now, if you have a problem that causes diarrhea, that might be a good balance for you, but you have to keep that in mind.

Why Do People with Crohn's Sometimes Have Eye, Skin or Mouth Problems?

Dr. Rubin:

Eye problems in Crohn's disease are uncommon, but it's something that we do see. First, there are those that are inflammatory-related, like iritis or uveitis, that can actually accompany the bowel disease. So you treat the bowel and the eye gets better. There are rare cases where the eye problems will just continue to give the patient trouble despite the bowel being under good control, and then specific treatments of the eye need to be administered.

There are other eye problems that occur with IBD that are not related to an independent inflammatory process but are related to our prescribed therapies. Steroids can cause cataracts, and they can cause glaucoma.

The two specific skin problems that are related to inflammatory bowel disease are conditions known as erythema nodosum, E. nodosum, the development of painful red nodules, the most common location of which is on the anterior surface of the lower legs, right over the tibia or shin bone. They're quite painful to the touch. That's characteristic of this particular skin lesion, which often responds when you treat the bowel.

Pyoderma gangrenosum is the other one. It's described as a purplish-looking, wet-appearing ulceration of the skin, and some have described it as 'inflammatory bowel' of the skin. Pyoderma occurs when there's been some injury to the skin, but it may occur for no obvious reason. Pyoderma sometimes will not respond as well to treatment of the bowel, but it does respond beautifully to some of the same treatments that we use for the bowel.

Patients with Crohn's can develop ulcers in their mouth. The first thing we need to do is to make sure that it's not herpes because herpes in the mouth or around the mouth can cause a similar appearance, and that is a viral infection. That would be treated differently than if we think there are mouth ulcers that are related to active bowel disease. Treating the bowel often helps to treat the mouth, but in some cases we need to work with our oral surgeons to help us with these treatments.

What Causes Liver and Kidney Problems in Crohn's Patients?

Dr. Rubin:

There are a variety of things that we always screen for, and one that's very important would be liver disease. There's a whole bunch of things that can happen in the liver related to IBD. Some are related to medicine. So when we obtain liver function tests the test may reveal that there's a mild elevation of one or more liver enzyme.

Other times, though, there are inflammatory conditions of the liver that we'd want to know about. One is called primary sclerosing cholangitis. That means there's inflammation of the bile ducts, and that's something that we screen for by checking liver function tests. Another one is called autoimmune hepatitis, where the liver becomes inflamed. That is also a very treatable condition with anti-inflammatory therapies. So we keep an eye on that.

Another organ that can be involved is the kidney. We monitor kidney function when patients are on some of our medications. Patients who have Crohn's disease can have kidney stones, and the kidney stones can form from malabsorption of calcium. They can also form if the patient has a lot of diarrhea over a long period of time and they tend to become dehydrated. Those are a few things that we look for that are less common.

Do Crohn's Treatments Cause Symptoms Unrelated to IBD?

Dr. Rubin:

Each individual medicine has its own list of side effects. But there are some common ones that we always talk to patients about. The class of medications known as aminosalicylates or 5 ASA therapies, the drugs that some in the audience may know of as mesalamine (Asacol, Canasa, Pentasa, Rowasa, Lialda), balsalazide (Colazal) and olsalazine (Dipentum) - for the most part, are extremely safe. But there is a rare, on the order of one in 10,000, risk of causing kidney problems. So we monitor kidney function when people are taking those therapies.

With sulfasalazine (Azulfidine), because of the sulfa, some people develop a rash and may have nausea related to that.

There are all sorts of things people can get when they take steroids. They can affect their joints, their bone density, their eyes. And we always keep a close look on that, and our goal with anybody if they need prednisone is to get them off of it in as short a time as we can.

When we put people on the immune-modulating therapies, like azathioprine (Azasan or Imuran) or 6-MP or Purinethol (mercaptopurine), we also monitor them for drug related hepatitis or bone marrow suppression or pancreatitis. People who develop inflammation of their pancreas would develop abdominal pain or nausea that they haven't had before, and when you stop the medicine, it goes away right away, and it's diagnosed with a simple blood test. So we monitor for all of those different things. Rarely, people can have severe joint pain when they're started on those medicines, usually with the first or second dose of the medicine. If that ever occurs when you take a new medicine, you should obviously stop it and notify your doctor.

And, of course, the biologic therapies can have a variety of different side effects or risks, and we monitor blood counts and liver function. When we give drugs like Remicade (infliximab) and Humira (adalimumab) there's a risk of a rash, there's a risk of an injection or infusion site reaction, and rarely people have allergic reactions, so we'd want to know about those.

What Are the Goals of Treatment for Non-Digestive Crohn's Symptoms?

Dr. Rubin:

The goals that I would emphasize are, number one, understand the relationship between your individual extraintestinal problems and the bowel disease. In other words, is this related to bowel activity or is this independent of it? Do the treatments of one treat the other, and how can you bring it all together to improve your own existence and quality of life?

Number two, do not let your symptoms control your life. It's very important that people understand. I want people to remember that these are treatable problems in the vast majority of cases, and you should seek appropriate and effective therapies. If that means seeing other specialists for the joints or for other parts of the body, do so, but see the people who can help you with these problems.

Number three, understand what maintenance of the disease means. What I mean by that once the disease is under control, maintenance means taking therapy for a chronic condition that will reduce the likelihood of relapse, and that goes not only for the bowel but for all these extraintestinal problems. It's much easier to keep your disease under control than to try to treat it when it continues to flare.

More on Crohn's Disease Symptoms and Treatment

If you'd like to know more about recognizing and managing non-digestive symptoms of Crohn’s disease, listen to the entire show and hear Dr. Rubin’s answers to questions from the audience.

For more information on Crohn’s disease, check out these EverydayHealth resources:

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